Introduction

How long would I have lived if I hadn’t been taken to A&E on August 21^st 2006 I thought to myself. The following morning I asked the doctor that same question. His reply was worrying, “Maybe about 1-2 weeks” he replied. That scared me knowing that I had been pushed from pillar to post for 3 weeks prior to the A&E visit in Prince Phillip Hospital.

At that point everything was playing on my mind; the length of time I would be in hospital, being a cancer patient, chemotherapy and its terrible side effects and the fear of not achieving remission. Unfortunately, I had no choice, I had been diagnosed with Acute Myeloid Leukaemia and I had to deal with that.

Looking back, the early days were overwhelming. I was a fit and healthy 22 year old sportsman, who doesn’t smoke or take drugs and had a job I really enjoyed. I found it hard to understand why all this was happening to my family and I but at the same time I understood that I needed to go through some bad times to get back to the good. I have always been determined to get over this disease and get my life back to normal as quickly as possible. After reading Steven Gerrard’s Autobiography I found the strength to fight on after he used the quote “Meet the Challenge, Beat the Challenge” I have said that to myself so many times during treatment and I believe it has helped me up until this very day. The words really are inspiring me as I feel I've met the challenge and Im trying my very best to beat it.

Now, having spoken to many different people about Leukaemia, I believe that very few know a lot about the disease. I will try to explain the process of Chemotherapy and how it affected me as well as writing about the Radiotherapy, the Transplant and the Infections that took over my life as a result of having Leukaemia.

Lastly, if you are already bored reading this, I suggest you stop now and please accept my apologies. This is ‘real life’ and I will tell it how I have experienced it throughout the diagnosis.

In The Beginning

I have never been like the Incredible Hulk but before all this I was a fit and healthy man. I was a 13stone 7llbs Rugby player but after my Transplant I left weighing only 7stone 6llbs, I felt awful. Anyway.......... 

I had been playing Cricket every week that summer and had started back pre-season training with my Rugby club Betws RFC. I have never smoked or drunk alcohol excessively so I found it hard to understand how I became so ill within a few weeks.

I had holidays booked in work and I decided to go abroad with one of my mates. We booked a weeks holiday in Tenerife and jetted off from Cardiff feeling excited and happy. The holiday went smoothly and I arrived home a week later with a nice glowing tan and empty pockets.

There was nobody at home at this point as my parents and brother were all on their holidays abroad so I had a bath and an early night. The next day I was feeling slightly ill and I surprisingly woke up on the bottom of the stairs dazed and confused. After a few moments, I realised that I had an epileptic seizure, these were not a surprise to me as I have had many in the past. I phoned my parents in Tenerife and we all agreed for me to fly out and spend the week together. So that I did, I booked a late flight and I was flying the next day. Three days into the holiday, I started to have pains in my gums and a lot of bleeding whilst brushing, I ignored it and continued to enjoy in the sun. The next day it started to feel worse, a section of my gum was black in colour and was extremely painful. I spent most of the remaining few days in bed and managed to fly home having been dosed up with painkillers.

During that week it’s fair to say I deteriorated so I decided to ask for some time off work to get better. I went to the Doctors and was told to take a week off work. I did this but it wasn’t helping. The fatigue was getting ridiculous, I couldn’t stand for more than a few seconds without needing to sit down. I went back to work the following week but it was no good, I couldn’t do my job as I was so tired and in extreme pain throughout my body. I had started to look ill and I remember my colleagues telling me to go home, I did just that.

The very same day I went back to the Doctors and I was told I had a chest infection and given antibiotics. I was also told that I should go back to the dentist to see about my gum problem. So, as advised I went straight to the dentist who advised me that I should go to A&E ASAP.

My parents drove me down to A&E that night. I remember being in so much pain, I could barely speak. I waited an hour and then seen the on-call GP. He took a urine sample and diagnosed me with a kidney infection, yet again he prescribed antibiotics.

I managed to persevere with the pain for the next 2 days until it became too much. My parents again drove me to A&E in Llanelli where I sat in the waiting area clenching my fists because of the pain. After about 2 hours waiting, I remember my name being called. It was a relief to know that I was finally going to be examined properly. The Doctor gave me a good examination and was very nice. He took blood samples and sent them off to the Laboratory. A nurse told me that I would be staying overnight in the AMEU Ward. I was transferred to the Ward, said goodbye to my parents and fell asleep. I have basically been in hospital ever since!!

What is Leukaemia

Leukaemia is essentially a cancer of the blood. There are many different types and sub-groups of which Acute Myeloid Leukaemia (AML) is one. It’s pretty serious but also the most common form of the disease in adults.

Normally, blood cells are made in the bone marrow in an orderly and controlled way. In Acute Myeloid Leukaemia (AML), this process gets out of control and many abnormal Leukaemia cells are made. These cells are immature and aren’t able to develop into normal functioning blood cells. They are sometimes called blast cells.

AML is an overproduction of an early myeloid cell. In most types of AML the Leukaemia cells are immature white cells. But, in some less common types of AML, too many immature platelets or immature red blood cells are made.

The immature cells fill up the bone marrow, taking up space that is needed to make normal blood cells. Some Leukaemia cells 'spill over' into the blood and circulate around the body in the bloodstream. These Leukaemia cells don’t mature, and so don’t work properly. This leads to an increased risk of infection as well as symptoms such as anaemia and bruising caused by fewer healthy red blood cells and platelets being made.

Regarding my symptoms, Leukaemia explained why I was so pale because I had a lack of functioning red blood cells. This also meant I was exhausted as not enough oxygen was being carried around my body. In fact, my consultant said it was like walking around with a couple of bags of blood missing. It also explained why I was at risk to bacterial infections because my white blood cells were not protecting me as they should.

Around 115,000 people within the UK have a Blood Cancer and it will kill approximately 11,500 people each year.

Treatment has improved massively since the 1960s and for AML patients, between 75 and 80% will achieve remission after several cycles of Chemotherapy. However, only around 35% of these patients will never be bothered by the disease again.

The Diagnosis

This probably sounds strange but in some ways I was relieved to discover what was responsible for my symptoms. I wasn’t glad that I possibly had Leukaemia but I was relieved knowing that something had been diagnosed.

In AMEU the doctors established that my heart and other major organs were fine with the exception of a slightly enlarged liver. This was quite worrying but I was told that it is normal with the illness I have.

More armfuls of blood were taken leaving my veins soft and limp, not a particularly enjoyable experience but that was the least of my worries.
I was then transferred to the haematology ward at Cardiff’s University of Wales Hospital.

Within minutes of arriving at the Hospital I had my Bone Marrow taken, this involves having a considerably large needle pushed into your lower spine bone and having the marrow squeezed out. It was not a pleasant experience and was pretty painful but unfortunately it was a necessity to confirm or rule out if I had Leukaemia.

I can remember walking around the ward and seeing lots of people with the usual hair loss that follows Chemotherapy. I also noticed a high number of very ill patients. Seeing these people made me realise that the difficult situations were just around the corner.

Within an hour, a doctor entered my room and confirmed my worst nightmare-I had Acute Myeloid Leukaemia (AML).

I was told I would be in hospital for between 2 and 3 weeks and that my Chemotherapy would start within days.

Now I was very worried but I decided at that moment to fight like I’ve never fought before, taking great aspiration from the Liverpool team who defeated AC Milan in Istanbul in 2005 after being 3 nil down at half time.

Reaction

Leukaemia and Cancer are scary words. They are both words that no-one wants to hear yet alone be diagnosed with. Personally it was difficult but I knew I could focus my thoughts on fighting the disease and striving to cope with the treatment.

A Professor came to have a chat with me and he explained what will happen over the next year. Basically, the next year will be a life of Hospitals, Chemotherapy and Illness. He explained that I would lose my ‘beloved’ hair and would be unable to work for at least 18 months. The Professor then explained that I would soon be having a ’Hickman Line’ installed in my chest, this is where I will have the Chemotherapy inserted, have blood coulters taken and given the necessary Transfusions. All this was so much to take in, I just could not believe that it was happening to me, it didn’t feel real but deep down I knew it was more than real.

The reaction of my family and friends has been incredible and I would like to say how grateful I am for everything they have done for me and are continuing to do. I am fighting this for you all! I will never give up battling and fighting,I have too many people who mean the world to me and I will keep fighting for aslong as i possibly can. I have always hated losing and this is one battle im not going to lose!!

  It’s Hickman Time

The time had come for me to have the HICKMAN LINE installed. I was slightly nervous as I didn’t know what to expect but was assured that I’d hardly feel a thing. A Hickman line can be used to give you treatments such as chemotherapy, antibiotics and intravenous fluids. It can also be used to take samples of your blood for testing. Hickman lines can also be used to give liquid food into the vein if your digestive system is not able to cope with food for any reason.

You can go home with the Hickman line in and it can be left in for weeks or months. This makes it possible for you to have your treatment without having to have needles frequently put into your veins. This may be very helpful if doctors and nurses find it difficult to get needles into your veins, or if the walls of your veins have been hardened by previous chemotherapy treatment.

The Line is inserted into a vein below the neck and the internal end sits just above the heart. The other end emerges with two little pipes and sits on the outside of your chest. It’s inserted under a local anaesthetic. I wouldn’t say it’s a particularly pleasant experience but it is totally painless. For the first couple of days it feels a little strange having these two tubes dangling in front of you but you quickly forget about it. The procedure starts off with a lot of x-rays of the neck before anything happens, and then once a vein has been confirmed as suitable, the line is fitted.

At about 11.00am I was given antibiotics prior to going down to get the line fitted. I was wheeled into the operating theatre and transferred from my bed to a table. X-rayed and anesthetised they made their incisions and inserted a wire, everything seemed to be going okay, until they started pushing and turning in order to get the line in place. I was assured that this was quite normal and was told that it can be harder to put in if you have muscles around the area. So why mine was so difficult I’ll never know! I didn’t think I had any muscles left, but I must have because the procedure became slightly uncomfortable. I cant say that it was painful but uncomfortable sums it up well.

The Hickman Line is extremely useful because your daily blood test can be taken from the line, blood can be put in through it, as can antibiotics should you fall ill. Anything put into you goes directly to the heart and is distributed immediately throughout the blood system. This was great because it saved my veins from being ‘attacked and stabbed’ at least 6 times a day.

When the Hickman line is not being used there is a small risk that it may become blocked. To stop this happening a small amount of fluid is 'flushed' into the line using a syringe. The fluid is usually Hepsal and is done at least once a week. The exit site also needs to be cleaned once a week to reduce the risk of infection. The dressing on the site also has to be changed once a week.

I have been very lucky to date with my Hickman Line. I have not had any infections in the line or any clotting. I have had the same line installed now for 15 months since I was diagnosed.

Feelings

For my family and friends, all they can do is support me and that is it. Something I have learnt is that in many ways it is more difficult for people around you who are unable to do anything. I would hate it if it was one of them going through this rather than me. All I have to do is lie back and let the medical team work their magic.

Personally I felt in shock and disbelief, I felt numb and found it very hard to express any emotion. I could only take in small amounts of information and I didn’t want to talk about the illness, I just wanted to pretend like it wasn’t actually happening. I wouldn’t say that I was in denial over the disease but deep down I was suffering from fear and uncertainty. In my head I kept asking myself ‘am I going to die’ and ‘will I be in unbearable pain’ and I found that uncertainty difficult to deal with, I was entering a world of the unknown and even though I was told what treatment I would receive, I still found it hard to convince myself that there was nothing to panic and be scared about. The uncertainty about my future caused me a lot of tension but I realise now that fears are usually worse than the reality.

I was determined not to show my true emotions to my family and friends, of course I was scared and in fear but I choose to deal with that in my own way. I didn’t want to discuss it with my family and end up upsetting them more than they already were, I thought that would be unfair on them so I gritted my teeth, smiled and reassured them that I would be fine in no time.

I feel a slight amount of embarrassment and quite shamed about some of the feelings I was experiencing but I couldn’t help it. I found myself feeling quite resentful at times, thinking things like 'It's all right for you, you haven't got to put up with this'. I felt awful thinking things like that but it was just going through my head, I felt miserable because I had Leukaemia while other people are well and carrying on with the normal things in life. I do regret thinking like that but at the time my head wasn’t in a good place. Thankfully the resentment didn’t last for long and I was back in a good state of mind soon after.

My parents were coming to see me at the hospital everyday of the week and spent most of the day with me, they would never have dreamt of not visiting but I know this was exhausting for them.

I know a number of people were upset with my diagnosis, my parents, brother, uncle, aunty and cousins were all devastated but I tried to keep their spirits up by smiling and laughing as much as I could. I didn’t want them worrying and stressing themselves out over me, I wanted them to know that I had the strength and dedication to get through the illness. I have family and friends who I love and Im not going to let the Leukaemia deny me the chance of living my life with them.

• Illustration courtesy of cancerbackup

The first phase of treating my Leukaemia was Chemotherapy. I didn’t know anything about it but I was aware that it can be an unpleasant time when undergoing the drugs. I was told that I would be given a cocktail of chemicals that will quickly attack my dividing cells and wipe out my immune system. This was quite daunting and worrying but I just had to sit back and take everything that was given.

As well as killing off the cancerous cells it also affects other similar cells in the body, this causes undesirable side effects. Hair loss occurs because hair follicles are hit hard. Strong chemotherapy also wipes out cells that line the gut making it incredibly difficult to eat food and can cause severe diarrhoea. It also affects the cells involved in reproduction so after the first few days of Chemotherapy I had to go to the fertility unit and give a sample. Being sick and very unwell this was the last thing I wanted to do but it had to be done. I was too weak to walk so I was wheeled down by a porter. A nurse greeted me and handed me a ‘pot’, I found this quite embarrassing and awkward but the nurse was great and told me not to worry as they are used to dealing with these situations on a daily basis. This put my mind at ease. It was quite upsetting knowing that I will probably be infertile after all the treatment but the ‘sample’ is always there if I need it in the future! I was concentrating on the immediate future anyway at that point so I didn’t let that upset me too much.

I was told that I would need five cycles of Chemotherapy. There are different types of Chemo and each cycle can last between 5 and 14 days. The Chemicals are usually placed in bags on drip stands and then hooked up to my Hickman Line. I was also given injections of chemicals on certain days. It sounds strange, very strange actually but my Hickman Line and drip stand became a friend, a companion that was there with me at all times, I was constantly attached to both.

I reacted very badly to the Chemotherapy, the sickness and diarrhoea was horrendous but I knew I had to go through the pain and discomfort to get my life back as normal. I would dread every time the nurses walked into the ward to give my Chemo, I felt like running away on many occassions but I didn’t have the energy to walk yet alone run, unfortunately I was there for the long haul.

The Chemotherapy was causing me to have extreme fevers, it was terrible. It felt about 10 times worse than having the flu and my temperature would always sore to over 38.5 degrees but I would feel freezing cold. No matter how many blankets I put over me or how much clothing I had on, I still felt arctic cold. The nurses were trying to bring my temperature down but I was freezing and couldn’t handle losing the blankets or the extra t-shirts I had on. As well as the horrible shivering, I was constantly sick and it was a very unpleasant experience.

The doctors and palliative care teams messed around with the anti-sickness medication trying to get it just right, I tried different combinations of Cyclizine, Metoclopramide and Ondansetron but I couldn’t stop vomiting. I then went on a slow pump that constantly injected me with anti-sickness drugs, this seemed to help a little but I found it impossible to eat at all, I had no appetite for food of any kind. This is when I knew that the weight was going to drop off quickly unless I could push myself to eat but I found it so hard, whatever I put down came straight back up. This caused a few arguments between my dad and I but he was trying to help me eat because he knew how important it was. The Chemotherapy continued for another few days and after 2 weeks in hospital I was allowed to go home. I didn’t feel great but home was the best place to be, I just had to be careful because my immune system was low and I was prone to catching all infections. Anyway, that was one Chemotherapy cycle over and another four to go!!

I left with a full head of hair and I weighed in at a whopping 12st 8llbs, meaning I had lost around 9llbs in the 2 weeks I was in hospital.

Anti-metabolites are a class of drugs that interfere with DNA and RNA growth. These agents damage cells during the S phase and are commonly used to treat leukaemia, tumors of the breast, ovary, and the gastrointestinal tract, as well as other cancers.

Examples of anti-metabolites include 5-fluorouracil, capecitabine, 6-mercaptopurine, methotrexate, gemcitabine, cytarabine, fludarabine, and pemetrexed.